Lynayah

Yes! Wow, what a great question.

It can be frustrating because when I find something that really tastes good to me, I get so excited . . . and then after a day or two, I don't want it any more.

Back BGF (before gluten-free) days, it was easy to eat the same things over and over again, without getting tired of them -- the list of things I could eat every day without tiring of them could go on forever.

Not so now. Even if I make gluten-free versions of the same foods, I still tire of them more easily. I'm not sure why, except maybe my body is telling me I need to make sure I eat a more balanced selection of foods.

My gluten challenge made me so sick, I was beyond relieved when the time came to give up gluten, but . . .

I DREAM ABOUT EATING GLUTEN ALL THE TIME!

I'll be at a party and take a bite or two of crackers, cake or a cookie before remembering I shouldn't eat it.

Then I freak out. Then I wake up. Fun.

I had someone call me and tell me that she couldn't lose weight until her gliadin went back to normal. True? False? I hope to learn more about this. Anyone?

I am dairy, gluten and soy free and I use PB8. I like it a lot. Bought it at Whole Foods. The folks that work in that section are very knowledgeable and helpful.

Here you can see the ingredient list:

Open Original Shared Link

Kayo -- what do you like about this product? I'm thinking of trying it. Thanks.

In addition to the answers you'll get here, you might also want to read this thread:

You're not crazy or making too big of a deal out of how you feel. You're right to care about feeling as comfortable as you can.

Hi, Everyone:

I've been struggling with losing weight. I have also been struggling to get my gliadin level back to normal.

I'm wondering: Has anyone here found that once their gliadin level returned to normal, their body weight returned to normal as well?

Are there any articles about it?

Thank you for any information on this!

I totally get it. I was a skeleton with severe malabsorption last June. I was very, very ill. I started to feel better right away,then had new problems come up like: secondary intolerances (like 20 of them), neuropathy, water weight gain (massive), bloating and gas. All of it has resolved, except for the weight. I gained 100 pounds in 6 months. I eat 1300-1500 calories per day. I exercise a LOT. I eat clean. Rarely I will have a very small gluten-free brownie or a slice of gluten-free bread. Mostly lean proteins, veggies and very little fruit.

I went from scary skinny to slightly plump in 6 months. Doesn't matter what I do, I can't lose weight. I can eat 500 or 2000 and can't lost weight. Doctor said it does take a long time to recover so that your body doesn't think you're starving. But this is ridiculous. So, yeah, I get it. Feel free to vent to me

Wolicki, thank you so very VERY much for posting this.

People think I'm crazy when I tell them I can't lose weight by cutting calories and increasing exercise. They tell me that as long as I am burning more calories than I eat, I'll lose, and that I must be in denial if I'm not losing.

I KNOW HOW TO LOSE WEIGHT, but my body seems to have forgotten.

Weight has always been an issue with me. I was never a victim of underweight -- I have always struggled.

I finally lost weight with Weight Watchers -- over 100 pounds, which I kept off for close to 20 years. It wasn't easy, I had to count every POINT, watch every bite, but it worked.

I guess I'm lucky that I've only gained 20 pounds since being diagnosed last September. So many have gained more. I have been able to maintain my current weight by watching my intake. I seldom go over 1,500 calories a day -- maybe once or twice a month when I eat out, and even then it's seldome over 2,300.

Like you, I eat clean. I know how to eat right. I KNOW ALL THE RULES ABOUT FOOD IN AND CALORIES BURNED.

The problem is that my body seems to have forgotton the rules. For those of us who suffer from gluten-intolerance, the old burn more than you eat rules don't always work, and I wish to goodness that the medical community would wake up and address the issue better than they now do.

That said, I count my blessings every day that I've finally gotten a diagnosis and am on my way to healing. I count my blessings that I know how to eat clean and how to take care of myself. I count my blessings that I have a disease that can be treated by eating correctly -- it could be so much worse.

Every day I try something new -- looking for something, anything that satisfies me and helps me get back to the right weight. After being morbidly obese, it is extremely important to me that I keep my weight in check -- psychologically as well as physically.

I seem to do best with whole foods only, low fat (not NO fat -- a moderate amount of high omega), high fiber -- that's what has allowed me to maintain this weight gain without going higher. BUT I WANT TO GO LOWER the way I used to when I ate this way previously !!!! Augh!!!! It is so frustrating.

Whoops, I'm slipping . . . I need to go back to counting my blessings again . . . this happens to me all the time.

Anyway, I can so relate! Thank you again for posting.

PS: I get plenty of sleep and my thyroid has been tested as fine . . . numerous times.

I really think that our bodies just hold on to anything and everything. I'm excited to see if I start to lose once my gliadin level gets back to normal . . . THAT'S IF I CAN GET IT BACK TO NORMAL!

I am being very strict but my gliadin is not back to normal yet. I'll get checked again next month.

That said, I think I'll start a thread about weight loss and gliadin levels. I wonder if others have found that their weight returns to normal once their gliadin level goes down. Watch for it!

Hi Everyone!

I'm a Celiac and I'm currently soy, gluten, dairy, egg, oil, and egg free...and looking for a probiotic- lol. =) Anyone, with these issues, have one that you would suggest? Thanks so much! I really appreciate it!

I've been using Digest Gold with Probiotics. I'm very sensitive to gluten and I've had no issues with it. I'm still learning about probiotics, so I'll be interested in seeing what others here have to say.

Also, for anyone who hasn't seen it, there is an article here about the latest research in probiotics: https://www.celiac.com/articles/22105/1/Major-Breakthrough-Prebiotics-and-Probiotics-Can-Reduce-Inflammation-and-Reduce-Symptoms-of-Celiac-Disease/Page1.html

I'll do it a little later when I have time. Fraid I don't know what ADA means though...

Bea

Thanks, Bea.

Has anyone here tried Garden of Life Raw Protein? It is labeled gluten-free, soy-free. It doesn't appear to be certified, but I'm wondering if it might be an option.

Ingredients:

amaranth sprout, organic quinoa sprout, organic millet sprout, organic buckwheat sprout, organic garbanzo bean sprout, organic kidney bean sprout, organic lentil sprout, organic adzuki bean sprout, organic flax seed sprout, organic sunflower seed sprout, organic pumpkin seed sprout, organic chia seed sprout, organic sesame seed sprout

RAW Probiotic and Enzyme Blend - High protein chlorella, protease, bacillus subtilis

Other Ingredients: Saccharomyces cerevisiae and lactobacillus bulgaricus.

Free Of: Gluten, dairy, soy allergens, lactose, fillers, isolates, synthetic nutrients, artificial sweeteners and preservatives

If anyone who is super-sensitive has tried this with any success, please let me know.

It's been hard for me -- I recently threw away TONS of "gluten-free" protein powder because it gave me a horrible reaction. However, I am wondering if it was the whey, too. So I'm also wondering if a rice protein powder might be better -- perhaps best to stay away from soy, whey. Not sure about hemp; I don't know much about it. Anyone?

With any processed foods, I do much, much, much better with those that have been certified gluten-free by GIG. I checked their web page and didn't see protein powder listed, but I may have missed it.

Just wondering if anyone else has a favorite protein powder that is certified gluten-free.

I use the Jarro liquid silica brand (Jarrosil -- I think). Previously I used "Biosil." Both work.

I continue to be amazed at the improvement I am noticing... I used to peel my nails in the old pre-supplement and pre-awareness days that the wheat family bothered me. I improved but had to go off all trace gluten to do better. And even with all my other mineral and vit. D supplements after going off all trace gluten, my joints were still too easily messed up by any physical strain at all.

Yes this looked and felt very much like fibromyalgia... I think it often goes with joint hyper-flexibility which I have had too. Now with the silica even my neck and trick back as well as old hip injury areas have stabilized finally and are doing well. It is amazing! Of course I still exercise--but now that means I can actually do so...and if I don't, it isn't as much of an emergency.

Interestingly, my good celiac co-worker and house buddy started taking the silica and msm as well as liquid sea minerals, magnesium citrate and E-zorb (best absorbaple Calcium you can get online) and he too has stabilized and is no longer having to constantly see the chiropractor!! Its worth the extra pennies just for that alone...

By the way, taking co-enzyme B vitamins on an empty stomach also help me and my buddy immensely too. I don't seem to absorb regular b vitamins very well--nor does he. But these co-enzyme ones by country life bypass the usual route and go directly into the blood stream. Great for the nerves, brain, heart, restless legs, wired forearms, anxiety and poor memory etc.!

Bea

Hi, Bea!

For ease of reference: Would you mind indulging an attention-challenged, brain-fogged "old lady" and list every supplement you speak of here, with the brand name next to it?

ABC Multi - Funforyou Labs

DEF Calcium - Horsepills, Inc.

Oh, that would be so very much appreciated. Please feel free to add any additional supplements you use that may not have been mentioned here. THANK YOU MY FRIEND!

Joint pain is very common with celiac--both due to inflammation from glutening as well as general poor absorption of minerals which often causes hypermobility making it easy to overstress joints. Vitamin D is important too. What has made a huge dif. for me is to take liquid silica drops as well as msm along with all my other minerals. Its good for building collagen as well as helping osteoblasts create bone. I can now do push ups etc. whereas before absolutely not--in addition my neck and back are way better too. This is amazing actually since I am now 60 and have had this problem all of my life... I just remembered seeing a panel I had done years ago that said I was low on silica...I finally decided to try taking some and yay what a difference!

Bea

Bea, thank you!

Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

Yes, BIG TIME. Feet, hips, hands and lower back are particularly intense.

Is Gluten-Intolerance also considered an auto immune disorder (in addition to Celiac disease)?

I ask because it is referenced as such in this article: Open Original Shared Link

Quote: "With autoimmune disorders, which include gluten intolerance and type 1 diabetes (but not allergies), the body attacks itself rather than the invasive substance, causing permanent damage if allowed to continue."

I would agree with everyone else that it varies for each person. I have been gluten free for 7 months and still am far from feeling 100%. I have seen many improvements such as less headaches, getting through the day without anti-diarrhea pills, less nausea, etc. I recently eliminated dairy products and am still trying to figure out what other foods might be making me react. I think it takes a lot of trial and error to figure our new bodies out!

Yes, so true chocolatequeen.

For me, it has been a MAJOR process of elimination (no pun intended! Ha!). Every week, I make more changes. Recently, it was going to a grain-free dog food.

Anyway, every little bit helps, thank goodness . . . and every step in the right direction is a step in the right direction.

I am non-celiac gluten intolerant.

I started feeling better right away, but not all the way. I go to the University of Chicago Celiac Center, and they explained to me that it can take many, many months for my gliadin level to come down, especially at my age (56). It is normal for some people to take a year or two to heal.

My gliadin level remains high -- after going gluten-free for many weeks, it actually went UP instead of down, which is also normal for many.

I will get tested again in a month or so and we'll see how it goes.

Healing, of course, does NOT mean you can eat gluten again, as I'm sure you already know, but I am mentioning it because there are a lot of folks out there who have uneducated doctors who tell them that, if they're very strick, once they're healed they can try eating gluten again. Just last week I spoke to a new member of my GIG group who told me her doctor had given her that advice. Augh!

PS: If you decide to go for more tests, DO NOT STOP EATING GLUTEN just yet. You need to have it fully in your system before the tests can be run. If you've already stopped eating gluten, you'll need to do a "gluten challenge" for a number of weeks before you can be tested.

You might want to have your blood checked for IgA and IgG, by a qualified physician who understands gluten-intolerance.

Enterolab might not be the best way to test.

I had blood tests done at University of Chicago Celiac Center. My IgA was extremely high, my DQ8, DQ2 and biopsy normal. No upper-villi celiac, but I was still very, very sick, and I had a host of GI and neurological issues (see below my signature for some of the symptoms I had).

Previous to that, another doctor diagnosed that I had almost no vitamin D in my body at all. Like you, I had to take prescribed mega-doses to heal.

I am gluten-intolerant and absolutely cannot eat gluten. If you are definitely high in IgA, you are the same. For more info, you might want to read Healthier without Wheat by Dr. Stephen Wangen -- on page 111 of the paperback version, there is an excellent chart that shows how someone who is high in IgA or IgG is definitely gluten-intolerant.

Right now, I am extremely sensitive to refined "gluten-free" foods. I stay away from most of them, but occasionally, I give in. I find I do best with GIG certified gluten-free foods.

For those who are are hyper-sensitive (or for those who are not hyper-sensitive but fear that cc may be an issue with healing), visit the Gluten-Intolerance Group (GIG) of North America site at gluten.net.

GIG has a gluten-free certification program that measures ppm's (parts per million). You can read about it on their site. GIG is a great organization -- their website could be a bit more user-friendly, but if you find yourself confused about anything, call them! They are wonderful about getting back to you and answering questions.

When I purchase refined foods, I look for the "Certified Gluten-Free" GIG label, and I do well. If it doesn't have the certification, I hesitate before buying and always call to speak to someone at the facility first. My first question: How many parts per million in your product?

If they don't know, or if it's over 10, I run the other way!

David....I highly suggest you read Dr. Peter Green's newest version of "Celiac Disease: The Hidden Epidemic.It's about as excellent a reference book as there is. He goes into detail about what you have to do in reality to live gluten free successfully.

Gemini: Thank you for this post! I have the previous version of Green's book. Should I order an update -- how extensive are the additions to the latest version?

Debbie Downer here, and I don't want to be: Soap, etc. and gluten -- watch for papercuts, other cuts, etc. If there is an opening in the skin, the gluten will get in. Also, if shampoo or conditioner gets in your mouth while rinsing.

David in Seattle: Your last post made me laugh so much! Then I wanted to cry because I COMPLETELY understand how you feel. I'm still working through it all, but as Jestgar said, it is true: my old life sucked and going through the process of working toward getting to the other side has been waaaaaay worth it.

I feel better than I have felt in goodness knows how long, even with the setbacks and aggravation of getting cc'd.

David, you're a welcome addition to this forum! Great sense of humor, outspoken and real. Great to have you here!

I am highly sensitive and find that I cannot use Trader Joe's products if they are processed in a factory or on a line that also processes wheat.

Toothpaste: So far, I do best with Colgate Fluroride Cavity Protection formula. I have had to eliminate other brands, Sensodyne included. I have also stopped using Colgate Total.

In the US and Canada, the single word "starch" in an ingredient list must, by law, be corn starch. Any other starch must be labeled with the name of the source.

US: CPG Sec. 578.100.

Canada: Food & Drug Regulation B.13.011 .

Good info! Thank you, Peter.